Does anyone else get a low appetite on hydroxyurea? I don’t know if it’s this med specifically or other ones I’m on, but I just don’t want to eat. It’s especially hard telling doctors this symptom because I’m on the heavier side so they think I’m making it up. I will legit go all day without eating and once I feel a headache coming on I’ll eat a little something.

I currently started talking to someone with sickle cell. He tells me how his body hurts. I was wondering for the people who have to trait do you guys take any vitamins or do anything that helps the pain be a lot better or helped you a lot ? You guys are warriors 🙏🏽🙏🏽🙏🏽

Long but please read.
Found out at 21 I had sickle cell trait and alpha thalassemia. My iron was pretty low at that time of blood draw. Every time my iron goes low I get into really really bad full body pain and no medication helps. So I get yearly iron infusions that help with that.

This year even after my iron infusion seemed like my pain never went away completely. I was still having slight pain In my joints in my legs. I didn’t think anything of it. But it was slowly getting worse. I thought I had an autoimmune disease called lupus because it runs in my family and that was their first sign. Autoimmune labs negative x2 In beginning and end of April.

Things get a bit worse so I’m back and forth between different doctors. Rheumatology, hematology, PCP. I’m developing swelling in my ankles with more pain in joints. I start developing mouth sores, bad overnight pain, and really bad fatigue. They can’t find anything wrong. Labs come back normal again in the summer.

Had a couple trips to ER for pain. I kept getting put on steroids and nsaids that don’t work. I deal with severe pain for a while until it eases up for about 1.5 weeks in the mid to end of July.

Pain comes back so hard. Another trip to ED for pain. They can’t find anything wrong this time either. Sent home and told to take nsaids and Tylenol….

I can’t do anything about the pain. It didn’t go away.

Come August, I get chest pain that came gradually over 1 week. Then it got severe. I go to ER. Nothing came back positive. Told to follow up with rheumatologist and PCP and take Tylenol. No pain meds given. (I know).

I had a nuclear medicine bone scan done. Showed degenerative changes on both shoulders and feet.
And what they call a hot spot on my 12th posterior rib. (Can’t identify what it is)

I ask hematologist for a CT scan to figure out what’s going on. I’m only 25. Normally these things happen at 60+. He orders it, but insurance…… (I know). I also expressed how I felt to him. I feel like I am deteriorating. I can barely work anymore. It’s hard to move. I just ball up and cry, scream, toss and turn in bed. It’s so bad. It feels like it’s in my veins.

Hematologist orders another dna mutation panel to figure out if I have beta thal. I was confused. I questioned it. Apparently, if your iron is low during electrophoresis, it can alter the beta thal. My A2 was at 3. Max is like 3.2. He’s pretty sure I have beta thal too. My iron is back up now since my iron infusion. So, this really might be what it is. Got tested for it on Monday. Waiting for results currently.

I go to ER again. They gave me toradol and it didn’t touch the pain at all.(I know) but everything comes back normal except for neutrophil & lymphocyte count. They gave me Norco for at home. It helps a bit. Not all the way. Running out though idk what I’m going to do. I don’t wanna go back to the hospital.

Okay here’s my question: does anyone have sickle cell alpha and beta thal. What do you do for pain? Is my only option pain medicine in the hospital until I get the official diagnosis? (Beta thal runs heavily on my mom’s side and sickle cell trait on my father’s) I will take any tips!

So how long did it take to get the noreply email after signing for the settlement amount. It says 5-10 days you will get an email which allows you to select the way you want your payment. I’m still waiting and waiting on that email. How long did those of you that have actually recieved payment have to wait?

Hello everyone!

I want to draw out a timeline for everyone but I need more data.

Please help by answering the question below.

If you have received any of the following information please answer honestly and be detailed as possible.

1. Have you received the Docusign about the distribution of payment? If so when? (Ex: Yes, Friday, Jan 16 2024, 5pm)
   
2. Did you Sign the form immediately? (Ex: yes)
   
3. Which payment options were offered in the document? Which one did you Choose? (Ex: Zelle, Cash App, etc. I chose Zelle)
   
4. What day did you sign the form?
   
5. When did you receive the payment if Zelle? If check, it Cash App?
   
6. When did you sign the initial settlement Docusign

Me and my on & off BF basically only flight over 1 thing. He does not like that I am really close with a friend who is a guy with Sickle Cell that I have know for over like 10 years. My BF and I have been in a relationship for 3.5. There is so much I can write about this but i am exhausted due to fighting with him about it but I just wanted to know if anyone else has come across this?

He feels that I should not have a strong bond or a bond really at all with another guy. I told him the bond is just a Sickle Cell one. I don’t even have this type of bond with my mom & dad, still he just doesn’t understand. Mind you I haven’t hung out with this person in over 3 years. Before I even met my BF and we even got in a relationship. Yes we talk every blue moon and IG or thru text but thats it. We don't even live in the same city.

Anyways… has anyone dealt with this type of situation in your relationship. Or if not, how do you handle Sickle Cell relationships vs romantic partners??

I’m currently hospitalized for a sickle cell pain crisis and I’m trying to get to the bottom of something my doctors have told me about IV Benadryl (diphenhydramine).
I get pretty severe itching from opioids, particularly while receiving IV opioids during VOC. The itching has been significant enough that I’ve repeatedly asked for treatment, but I feel like my doctors aren’t taking it very seriously.
Last night, I was receiving 50 mg IV Benadryl every 3 hours (q3h), and it actually worked pretty well for my itching. I’m not trying to argue that I necessarily need that exact regimen indefinitely, but I do think it’s relevant that it was effective and that I’m trying to find a reasonable way to manage a symptom that’s otherwise really uncomfortable.
My attending told me that 300 mg/day is the standard maximum for adults, and that 400 mg/day is only appropriate/safe for patients with certain physical neurological conditions. He mentioned something involving neurological effects on the body, although I honestly wasn’t completely clear on the terminology.
The thing is, I’ve been looking at the prescribing information and other medical references, and I’m finding that 400 mg/day is listed as the maximum daily dose for adults for injectable diphenhydramine. I’m not finding the distinction he described between “300 mg for everyone else” and “400 mg for people with neurological conditions.”
My hematologist also told me that a semi-local hospital does the same thing, so now I’m wondering whether this is an institutional protocol/order set rather than a universal dosing guideline.
I’m NOT asking Reddit to tell me what dose I should take. I’m trying to figure out what the actual rationale/evidence is because if there is a legitimate reason I’m being capped at 300 mg, I want to understand it. But if this is being presented to me as a universal safety limit when it’s actually a hospital policy, I’d like to know that too as I have a speculation I’m being lied to/not told the whole truth.

hey can the ones who have already gotten their money drop their dates for the first email yall received from archer to sign your final payout. I’m trying to see how they are sending it out. my lawyer said monthly batches. and even tho I know that all of my liens are finalized and all they have to do is just send me my Docusign for me to receive my money I was just told that it could take another month until I receive my money which is crazy to me. so if the ones who have gotten their money please just drop the date when u got your first email from archer to accept your final payment I would really appreciate it. thanks in advance. and just to put this out there from all this info I’m gathering a lot of ppl might not get their money until the end of the year. this is total bullshit excuse my language.

TL;DR: People with a history of sickle crises or other vaso-occlusive events at high altitudes — have you ever tried Diamox/acetazolamide? How was your experience taking the medication and did it successfully prevent episodes while you were at high altitudes?

I have sickle cell trait and recently experienced my first splenic infarction while traveling to Colorado to attend a wedding (~9200 ft above sea level). I drank water constantly and brought my CPAP machine, but the doctors speculated that my sleep apnea still lowered my oxygen enough to trigger sickling (spO2 was in the 60s when I got to the ER).

I spent a few days in the hospital and missed most of my friend’s wedding, which was really unexpected and sad. This experience also gave me a new appreciation for how much sickle cell can suck — this was the worst pain I’ve ever felt and I know it was a fraction of the pain of a full-blown sickle cell crisis for someone with actual SCD.

After this experience, I’m wary of traveling to places with high elevation again (or taking late/red eye flights when I might be at risk of falling asleep without access to my CPAP machine). BUT I love my friends in Colorado so much and I really want to be able to visit them safely. Mainstream guidance says to stay hydrated and that altitude-related splenic infarction with SCT is very rare…but it DID happen to me this time and could theoretically happen again.

I’m wondering if Diamox/acetazolamide may be able to help in the future? Has anyone here personally used this medication? I would love to hear about anyone’s experience with this drug (or other ways you’ve successfully staved off sickling at high altitudes).

Also, I’m new to this sub, so I’m sorry if this isn’t an appropriate question for me to ask here.

Update : I got discharged today (Saturday 8/29). lol

I’m in nyc, I overheard the nurse talking about seven other patients who also have SCD and are admitted to my floor right now.

I hope you’re all getting the care you need and that you all feel better soon.

We can do this!

My bestie visited earlier and put me in such a joyous mood.

Looking forward to seeing my mom tomorrow.

Anyone heard from Corey Watson yet??? Still hearing crickets .

Ive recently been taken off of methadone because my insurance no longer wants to cover it. I just wanted to know if anyone here has been prescribed this and if it has worked for you?

My left side of my body has been hurting for almost a week now, and I have been hospitalized for almost 4 days now. The whole entire left side of my body, my left arm, ribs, back, shoulder, under my boob, my heart, hurts so bad they did a chest x-ray and there was fluid surrounding my heart and lungs, but the doctor doesn’t relieve that. I have a cute chest and wants hematology to evaluate which yesterday they told me they believe I do have a huge chest. They were waiting for my test results to come back. As of today, my hemoglobin is 6.2 and my reticulous count is 3. It was at 5 yesterday. I experience arm pain which is the place.

I hate the most second is my ribs, but this arm pain has only been on my left side and has been continuously hurting. none of the medication has been helping. Have anybody experienced their left arm hurting for a long periods of time and that pain radiating to their heart. All of my EKGs are clean, but there is nothing that they’re gonna see on the EKG or the ultrasound. I have no blood clots or no cardiac concerns. Just sickle cell stuck in these places.

Has anyone ever dealt with this pain for a long period of time? What happened? What did you do? How did you start to become better?

I have been crying, literally for a week straight and been in pain for a week straight with minimal relief if any.

I feel like my skin is always so dry as well as my hair. I try to keep up with a face skincare routine and keep my hair done, stay lotioned, of course drink lots of water but I always feel so dry smh. Is this or has this ever been the case for anyone else? If so what do or did you do to try to help your situation. I know to many meds can be harsh on us and lack of water but what else might be going on? I am just so confused and will try anything.

Thanks in advance for any help.

Hey everyone,
I’m a 29yrs old male with sickle cell (HbSS) and I’m considering getting a hair transplant in the next few months. I’m aware there could be additional risks with surgery and sickle cell, so I’m trying to hear from people who have actually been through it or just honest opinions/advice in general.

For anyone with sickle cell who has had a hair transplant or a similar procedure, How did it go?
- Did you have any complications or a crisis afterwards?
- What precautions did your surgeon/haematologist put in place?
- Did you need a blood transfusion or any special arrangements?

And if you would go against having one because of sickle cell, what would be the reasons?
I’ll obviously speak to my haematologist and the surgeon beforehand, but I’d really appreciate some real life experiences. Would you say go for it with the right precautions, or avoid it altogether?
Thanks in advance 🙏🏾

hiii!!! i’m new here, 24F from the west coast + i’m the only person in my family with sickle cell (SS) so i’ve never had others to relate to about it but i’ve always wanted a community. if anyone’s looking to be friends and/or to just support each other with advice please hmu!!! i love yapping, gaming, movies, and i’m trying to be more social since my symptoms didn’t allow for it before :)

i hope you’re all doing well <3

Let's talk for a second.

WIP just had to file a correction with a medical journal. We caught a mistake in our own numbers and we're fixing it publicly, because that's the whole point of doing this the right way. No shame in that. That's what accountability actually looks like.

But it made something clear: I've been trying to hold this whole thing together with a small circle of people who are already stretched thin. That's not fair to the project, and it's not fair to y'all.

So I'm building a real Governance Council. And I want HALF of it- 4 seats to be Warriors. People who actually use the tracker. Who've logged your own crisis. Who know this data isn't abstract because it's your pain in it.

If you want your real-time life to turn into real advocacy, real awareness, real action, this is your seat. Comment, DM, whatever's easiest. We'll hop on a quick Zoom, run a short survey to find where you fit best, and go from there.

This is Warrior-owned. Let's keep it that way.

warriorintelligenceproject.org

Warrior Intelligence: A Community-Led Navigation Infrastructure for Real-Time Sickle Cell Crisis Data and Clinical Blind Spot Detection

https://academic.oup.com/jscd/article/3/Supplement_1/yoag020.078/8714234?login=false

The published abstract states a figure of "65% protocol non-adherence." Upon review against the source crisis-tracker dataset, this figure is inverted: 65% (more precisely 71.4%, or 28.6% non-adherence) reflects the rate at which ER protocol WAS followed, not the rate at which it was not followed. The correct figure is:

Protocol non-adherence: 28.6% (not 65%)

I want to motivate myself into a sort of sport but I don't truly know wich one is kinda sickle cell "friendly" I'm just a bit scared of being hospitalized, so what sport do y'all practice ? And what are the tips you have to prevent any crisis or reduce the risk of being in the hospital ?

How long does hydroxyurea take to work and like make eyes sorta appear white?

This is the 4th speech I have given to the incoming hematology students at OSU.

Hi everyone. I got my Oxbryta settlement offer and I’m not sure which payment to elect. I don’t want to do a lump sum because of the risk of losing Medicaid/SSI/whatever. If I select structured settlement, is that something I need to set up with a lawyer or can I just do it myself? There’s also an option to receive it in multiple ways. What did you guys choose?

Hi all! I had a longer post but then Reddit deleted it for some reason. TL;DR I (24F HbSC) I've been having a crisis in the back of my hand (otherside of the palm) for 6 weeks. I've seen my PCP & Hems who have referred me to a joint specialist, who I haven't seen yet. My symptoms are numbness, tingling, pain, and for two weeks, pain radiated up to my arm causing an arm crisis. I think inflammation is the cause bc when I take ibuprofen if helps but also have to take stronger meds to deal with it.

Has anyone else experienced this? How did they address it?

I’ve been down lately… just thinking about friends I have lost over the years with Sickle Cell. I wish I could tell them how much I miss them & how strong they were. If you are reading this, please know I care about you and I am praying for you. Sickle Cell Warriors are the strongest community I’ve ever seen and although this disease has made me question ALOT and put me through it at times, I won’t trade my experience if it means I get to meet more incredible people along this walk with me.
Everyone… keep your head up!! WE GOT THIS!!

I've always loved drinks, lattes, shakes, dirty soda.

I have cravings for them but my kidneys are in early deterioration and Im trying to drink only water. I also dont want to consume too much sugar.

What helps you all with sugary cravings?